← Return to Have Bronchiectasis, recently diagnosed with pseudomonas

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@katemn

As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain fog/rapid weight loss of 6# .. I am small anyway so 6# was a lot/terrible coughing. Was in bed or a chair for essentially TWO months! I was then diagnosed with Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi 4/5/17.

I was prescribed: 4/5/17 -28 DAYS CIPRO 2X PER DAY resulting in zero affect .. 4/26/17 I STARTED INHALED TOBRAMYACIN for 28 days on then 28 days off .. for 3 cycles .. a total of 6 months.

Things I've learned so far on this journey that I felt I had to share so another Connect Member might profit and avoid what has happened to me. Hugs and greetings to all. I am with you in spirit! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
*REQUEST AN APPOINTMENT ASAP WITH A GOOD RESPIRATORY THERAPIST FOR:
a. proper use of inhalers that would be best for you
b. proper use of inhaler spacers (for YEARS I was NEVER advised to use a spacer with my two inhalers!!)
c. proper use of saline solutions inhalation to help with mucus
d. proper use of Aerobika with saline inhalation

*KNOW THE PROCEDURE WHEN SICK:
a. At Mayo Clinic when sick you are to call the NURSE rather than the Appointment Secy. Having never been so sick before I did not know the procedure and called the Appt Secy
b. I waited a full month for an appt meanwhile getting sicker and sicker.

*IMPORTANCE OF LUNG CLEARANCE IN USE OF TOBRAYACIN (and THE ENTIRE JOURNEY OF YOUR LUNG HEALTH!)
a. use Aerobika® Oscillating Positive Expiratory Pressure Therapy with Sodium Chloride Neb Solution
IMPORTANT THAT I WAS NOT TOLD.. only read about: Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.

(you will need prescription for Sodium .. using with Neb) (AEROECLIPSE XLBAN 6 MONTH REUSABLE Nebs) (good prices @ http://www.aerobika-therapy.com/order-today http://www.shopnebulizer.com/p-26249-monaghan-aeroeclipse-reusable-breath-actuated-nebulizer.html)

b. use Aerobika ALONE for good lung clearance .. DEFINITELY using the "HUFF' cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
c. prepare Tobramycin antibiotic then use recommended Pari LC Plus and Nebulizer Pari LC
https://www.healthproductsforyou.com/p-pari-vios-lc-plus-adult-aerosol-delivery-system.html
IMPORTANT THAT I WAS NOT TOLD.. only read about:
Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.
d. use Aerobika ALONE for good lung clearance.. DEFINITELY using the "HUFF' cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
e. rinsing well with Colgate Peroxyl Mouth Sore Rinse after each Inhaled Tobramycin antibiotic session to take away the taste and then using Arm&Hammer PeroxiCare Toothpaste to ward off oral thrush.

I personally believe (and I will never be convinced otherwise) that the reason I got the 3 bacteria Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi is that NO ONE EVER stressed to the point of getting it into my head .. the true importance of LUNG CLEARANCE .. SO I feel I did not spend enough time and energy doing proper lung clearance .. allowing my mucus to accumulate!!

YES, on one level I was aware that the mucus in our lungs become a breeding ground for "nasty critters" .. BUT frankly the process of lung clearance for me is physically exhausting and VERY time consuming. PLUS not ONE doctor sent me to a GOOD respiratory therapist who explained/demonstrated the importance NOR the process of GOOD lung clearance! AND how did I learn about good lung clearance .. AND about the Aerobika .. AND about using Saline Solution?? You got it!! On our beloved Mayo Clinic Connect!! NOT from my doctor .. LATER after I ASKED about it I was able to get more information .. BUT thank heavens for our Connect! Hope the above .. detailed as it is might help someone else avoid what I am dealing with.

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Replies to "As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain..."

This post by Katherine is greatly appreciated..filled with important information. Thank you Katherine! ... and I hope with each day you will be feeling stronger. I am glad I found it, as the last few days of Connect have been hard to navigate. Is anyone else having the same problems I am having? For instance, I got to Katherine's email today for the first time ( did not see it yesterday as I tried to find emails). But today when I clicked, I only had the option of "1" or "2" - then with her email were only 2 other emails, dated March 10, and March 31. In the past we were able to click on "Last" and read from the bottom up, in sequence, starting from the most recent and going backwards. That was a good system. Could we go back to that system?! Pamela

Hi Pamela,
The system to which you refer "Clicking Last" and going back through the most recent messages still exists. However, I think you were surprised to see that the latests messages on this particular discussion thread were from March. That is because Katherine posted this information about pseumonas to this discussion specific to pseumonas called "Have Bronchiectasis, recently diagnosed with pseumonas." This was a good idea from her because then anyone looking for info about pseumonas can find it here.

The discussion thread where members post almost everyday can be found here: http://mayocl.in/2cwX36M
It is called: "(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS" and has almost 3000 messages. Can you believe it? What an incredibly connected community. Simply click "Last" on this discussion and you will see all the recent messages as you are used to doing.

Of course, with 3000 messages important info gets buried too. So members are also starting new discussion specific to particular topics like travelling with MAC, collecting articles, etc. See all the topics when you go to the MAC & Bronchiectasis group here:
http://mayocl.in/2ouP4e8
Pamela, I see that you are following the group, so you won't miss any messages. Happy Connecting!